Celiac Disease Trends

Julia Cruz BIDMC Correspondent

Published 12:37 PM EDT Sep 19, 2013

Robert Stanhope calls his diagnosis with celiac disease “a blessing.” For years, the 43-year old suffered intestinal problems that left him underweight and in pain, but his doctors couldn’t pinpoint the problem.

But that only made the problem worse. By 2004 Stanhope was convinced he had cancer.

“I was having severe diarrhea and abdominal cramping, dizziness and itchy skin - even depression,” he says. “I wasn’t sure if the depression was my brain or that it had just gotten so bad I couldn’t take it anymore.”

Stanhope’s primary care physician sent him to Beth Israel Deaconess Medical Center Gastroenterologist Dr. Richard Doyle, who ordered a full workup of GI tests. Within a week Stanhope had been diagnosed with Celiac disease, an inflammatory injury to the lining of the small intestine.

People who suffer from celiac disease are sensitive to gluten, a mixture of proteins found in wheat, rye, barley, and related grains. Stanhope says gluten free diet gave him a new lease on life.

“I felt better within 4 days and within 2 weeks I felt better than I had in years,” he says.

Medical literature used to suggest that 1 in 5000 Americans had celiac disease, but in the past decade that number has skyrocketed to 1 in just 120. According to Dr. Ciaran Kelly, Director of the Celiac Center at Beth Israel Deaconess Medical Center, new testing is one factor behind the growing legion of celiac diagnoses.

“New, accurate blood tests allow celiac disease to be readily identified,” says Dr. Kelly. “The tests don’t need to be run by specialists but can be run by primary care physicians. Most physicians 10 years ago didn’t really understand the disease.”

The new test works by detecting an antibody that circulates in the blood of people with untreated Celiac. The tests are highly sensitive, highly accurate and because they can be run in most standard labs, physicians are ordering the tests more frequently which has brought to light the enormous number of ways that celiac can present. A biopsy of the small intestine is still necessary for diagnosis, but the blood test helps decide who needs an endoscopy with biopsy and who does not. Once diagnosed, avoiding products with gluten can help a celiac patient feel better almost immediately, but the change in diet can be a challenge.

“Gluten has found its way into many places you’d never expect it – prepared foods, medication, cosmetics, candies. The list is almost never-ending which creates a huge headache for celiac patients,” says Dr. Kelly.

Melinda Dennis agrees. The registered dietitian works with celiac patients at Beth Israel Deaconess Medical Center and was diagnosed with the disease 16 years ago.

“Gluten is in so many products -- Communion wafers, some toothpaste, vitamins, etc.” says Dennis. “People who are newly diagnosed ask, ‘do I really have to stay away from these things?’ Right now, the diet is the treatment and it works well. There is no cure.”

There may not be a cure, but there is more awareness of celiac disease. That awareness has supermarkets offering gluten-free food products and even restaurants like PF Chang’s and Legal Sea Foods offering celiac specific menus.

“They’re very careful and use fresh pans and prepare food in an area where no other foods have been prepared,” says Stanhope. “They’ve figured out how to make people with celiac feel safe and trust them with their dinner.”

Stanhope says having celiac has actually made him a healthier eater and a better cook. He bakes his own bread, muffins and pizza dough using gluten-free grains and brown rice flour and is actually concerned about gaining weight for the first time in his life.

“Of all the diseases in the world to have, it’s a blessing. I don’t have to take medicine,” he says. “It’s improved my diet and taught me how to cook nearly gourmet cuisine. I’m just healthier all around.”